What? I had a stroke? Is that why dwirsafj?

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Monthly Archives: June 2012

Even if they do meet right in the middle

I was once friendly with a woman who got lost going for a walk around the block. Literally. Around the block. Three left turns and she was lost.

Now, thanks to the stroke, I am that woman.

That became painfully clear yesterday when CF and I drove down to Portland (Oregon, that is) to pick up her sister at the airport. That’s one of the tricks of living in Olywa: visitors can fly in to Portland (Oregon) if the airfare is cheaper than it is in to Seattle, even though the drive home is a bit longer.

By the way, it annoys me that the city in Oregon is the better-known Portland, since it takes its name from the more idyllic place in Maine. The Columbian place won its name on a coin toss, and would have been otherwise known as Boston but for the flip. Boston, Oregon? Don’t think so. They’d compost the Green Monster out here.

It became painfully clear yesterday that I am lost in space because we left home very early so we would have lots of time to visit a bookstore we have wanted to visit since we moved out here many years ago: Powell’s City of Books, the largest bookstore in the world, occupying an entire city block in Portland. I’d been reading their ads for decades, and we had come close to visiting several times.

We had pages of MapQuest maps to get us there, and I was the navigator, a role I had successfully filled for hundreds of trips. CF turned on NPR to keep her company while I confidently snuggled in for my usual 30-minute nap, blankie and eye mask in place.

When it became time to call out the first non-highway turn, I did my best, but no matter what piece of paper I tried to read, nothing made sense. As near as I could tell, we were supposed to turn onto Steel Bridge Road, but there was no such road. Well, there were signs for it, and there appeared to be something that looked like a steel bridge, but there did not appear to be a turn for it, and instead we turned onto what appeared to be a macadam bridge, or perhaps an iron bridge, or maybe a concrete bridge, I really don’t remember at this point, because CF was rather frustrated.

You see, she has historically been the one without the sense of direction, and I have always been the one who has confidently said, “It’s O.K., all we have to do is go around the block.” I’m the one who has never needed a map. I’m the one who could just sniff the breeze and say, “This way is north.” I’m the one who could glance at the sun and turn for home.

Now I couldn’t find a simple right turn.

So what does CF do? She wings it.

“This looks like it,” she says. And off she goes. All I can do is gasp.

“Oh, look,” she says, “Burnside Street.” And darned if it isn’t. Somehow, against all odds, she has found the very street that Powell’s Books is on. I look at the directions again. There were three or four more turns we were supposed to make. Somehow she has accomplished it all in a few magical swoops.

It didn’t seem to matter to her that it was Burnside St. East when we needed Burnside St. West. She assured me that it would turn into Burnside St. West at some point. How she knew that I do not know. And she said that if it didn’t, we would just turn around and go back the other way to find the west end. How she knew that I don’t know.

I no longer knew where I was. All I knew is that I wanted the books.

All of my life, I have been surrounded by books. My mother gave me my first one to explain why the doctor was cutting my umbilical cord. She had me enrolled in book clubs all through childhood, and I was always several grade levels ahead of myself.

I still remember the day I was allowed into the adult library in West Caldwell, N.J. It was called the Julia H. Potwin Memorial Library, and it was upstairs from the children’s library. You reached it by climbing an iron staircase and opening a wooden door. It was all very mysterious the first time. The children’s library was full of the usual drek, and I had exhausted its supply of Nancy Drew, the Bobbsey Twins, etc., and was desperate for something more substantial.

That first day, I climbed that staircase and opened the door and viewed the high stacks surrounding me. I was in awe. I turned to take in the whole picture and vowed I would read every single book. It was heaven.

And until yesterday, I was never cowed by a room full of books.

But Powell’s did me in.

The essential map of Powell’s

It’s the only bookstore I know of that has to publish a map of its layout. It’s the only bookstore I know of that names its rooms. We were there for two hours. I barely got through one-tenth of it. Barely, hardly, scratched it.

And then it was back into the car to get lost again, to watch CF pull off another magic maneuver to get to the airport to pick up Peggy. I mean she just about pitched the MapQuest directions out the window. She had me read them to her, then muttered something to herself about “going back the way we came,” which meant nothing to me, since the way we came was a few magical swoops as near as I could tell.

The streets in this part of Portland (Ore.) evidently were modeled after the streets in Portland (Maine), in that they are narrow, except flat (the ones in Maine pitch hill-wise and cobble-wise), so I had to close my eyes as CF maneuvered the magical arcs. The next thing I knew, she uttered a triumphant cry at the sight of a sign for the airport, and we pulled in just in time to greet Peggy.

And, I am happy to report, Peggy did indeed toss down her carry-on bag, give me a hug, and tell me I look great. Even if I did lose my way between the parking garage and baggage pickup trying to find her.

Every summer, my partner’s sister, Peggy, comes to visit. She’s the one sister who still lives on the East Coast, despite concerted, whining efforts to get her to move out here to the West Coast where the other four daughters live, three in Washington and one in California.

Peggy is the one closest in age to CF, and they have been best friends their entire lives. When I had the seizures last August, even before we knew I had also had a stroke, Peggy and her younger daughter Sharon flew out here to help CF, because that’s what kind of people they are, always sticking their noses into everything.

No, not really. They just wanted to help. They kept CF going. And they kept our son, NF, going too. (Not to shortchange my friend, Amy, or my mom and sister, who also raced out here to help, or all our local family and friends, but right now I’m writing about Peggy.)

Here it is, summer again, although last night at the baseball game we sat swaddled in blankets and sweatshirts in 40 degree weather while NF’s team WON THE CHAMPIONSHIP, beating a team that had beaten them all season long, even though that other team was all 14-year-olds and they are all 13-year-olds no I am not bragging just stating facts now we move on to Pony-13 Regionals woo hoo oops back to what was I saying oh yeah.

Here it is, summer again, which means that it’s time for Peggy to visit. Normally, this is a time of great anticipation and excitement as we joyfully plan activities and prepare accommodations and race around desperately cleaning the house for her arrival. We especially need to fumigate NF’s room to remove all traces of dead and dying baseball socks, historical remnants of Hot Pockets, and gnarled bits of pizza crusts.

But I find that I am preoccupied with what Peggy will think of me.

The last time she saw me, I was essentially unable to walk more than 10 feet, and I was using a walker, the one with tennis ball feet. I had barely made it home from the dreaded rehab unit, the place where they kept me locked in my bed, the place where they made me wear the burqa-sized diaper, the place with Fox News All. The. Time.

The last time she saw me, I was a wreck. I could barely get out a sentence. I couldn’t remember what was going on, what had happened to me, what had happened the day before, what had happened an hour before. She’d come half-expecting to attend my funeral.

So what will she think of me now?

How scrutinizing will her scrutiny be? Does she expect me to be the model of health, a perfect physical specimen, ready to climb Mt. Rainier, the local vertical challenge, or swim Hood Canal, the local horizontal challenge? Does she expect me to conquer the television game shows, her mother’s daily challenge?

Or does she expect me to be the same semi-comprehensible semi-drooling semi-smiling semi-clothed semi-conscious dragabout that I was last September? I’m not sure I can go back there. For one thing, I’d have to load myself up with an awful lot of Vicodin to drool like that again. Not to mention to smile like that again. Not to mention clothe myself like that again.

Not to mention feed myself like that again. Back then, I was eating mostly cottage cheese and mandarin oranges. I’m not sure I can look at mandarin oranges again for another year or two. Or three. Or even at Mandarins. Or at oranges. Or at navels. Or navies. Or at the navels of naval officers. The Mandarin Navy was eating mandarin oranges as their navels were inspected by midriff-baring naval officers munching navel oranges. Or some such modern nightmare.

But back to Peggy and that fast-approaching day-mare. Why aren’t there day-mares? I mean, you can look up the word and find a definition, but not much else, not a full and juicy tradition like you can for nightmare. Guess the sunlight kind of ruins things. Oh, yeah, back to Peggy.

Peggy will be my first repeat visitor, so to speak. Most friends and relatives have been around me all the time. I see them every day, or every week, so they have seen me morph back to where I am, more or less. Peggy will see me all at once to where I’ve gotten, less or more, in one gigantic plop. Will she think, “OH!!” or “ohh…”?

She’s talked to me on the phone, so I suppose part of what she thinks of me depends on how well my voice carries on the phone, which I fear is not too well. I know the croak doesn’t work well on Ma Bell. Even CF has to ask all the time if I’m OK when we talk. Strike one?

And it also depends on what CF has told Peggy about how I’m doing. I think she paints a pretty positive picture, except I know that they like to play a woe-is-me game with each other about how much they each have to do. (“I made 45 meatballs today.” “So what, I made 55 meatballs.”) That might work against me, if CF moans about taking care of me. Strike two?

And it also depends on what time of day Peggy’s plane arrives. If she gets in late at night when I am frozen stiff with exhaustion from M.S. anyway, all of the progress from the last year will be hidden anyway. Strike three?

But I’m going for the long ball here, and I think Peggy will score the winning run. I think Peggy will take one look at me, throw down her carry-on bag, fling her arms around me and say, “You look great.”

A note about a previous blog: The truly obsessive among you might recall my obsessiveness over the word “co-worker” a few blogs ago, and how the managing editor at a newspaper where I worked insisted that we always use a hyphen in the word, so that it never be read as “cow orker” by mistake. Wouldn’t you know it: in our local rag, The Olympian, just this past week, its printed edition ran an obituary with the hyphenated word “cow-orker.” I was so happy! Yes, I saved it.

When I was first diagnosed with M.S., I realized it was my last chance to learn to play tennis. I told this to a friend of mine who also had M.S., and she told me that when she was diagnosed, she used it as an opportunity to give up playing tennis, and was happy for it.

I went on to play competitive tennis for several years, kept doing it until I broke my arm, kept playing very competitive softball until I couldn’t walk after the games, kept riding my bicycle until I couldn’t—well, let’s just say that it’s not true that once you learn you never forget.

It was a long, bloody battle over everything with M.S. Not really. No blood. But I did fight over everything. Ask CF. I gave up nothing without a fight. She still has to bark orders at me about overdoing things. Not really. She doesn’t bark. She does make a funny yelp, though, if I touch her broken wrist the wrong way.

But now with the brain trauma after the stroke, I realize there are some things I have given up rather easily. First of all, as I have written about, long division, goom-bye. I can recall flunking my first test on long division in fourth grade, because I decided that no one really cared about the remainders, and if the question was 17 divided by 5, then 3 was close enough of an answer for me. I pranced to the front of the room, the first one done, smiling proudly at Mrs. Monell, only to have her grab my arm and correct the first one for me, before I slunk back to my desk. Slank?

Second of all, computer programming. I used to write this stuff in my head. In my sleep. In the shower. The mantra from the home office was “Document your code.” This always bugged me because I thought my code was absolutely clear, that any other programmer could tell what was going on with it. Now, I look at it and I don’t have a clue what I was doing. It is written in some sort of Trans-Siberian-Octo-Generian-Lactose-Intolerant-Ovulating language I have never seen before.

All of which brings me to the third thing I have given up without a whimper. Gardening.

Here it is, mid-June, and I have yet to turn over a spadeful of dirt. I busted my backside last year in the garden, rebuilt the entire perennial bed, planted all kinds of bulbs and seeds, put in 100 tulips for CF, made plans for a whole bed of lavender, the whole deal. For the first summer in the garden, the place looked pretty good.

Don’t get me wrong: I love flowers. I am fascinated by wildflowers, and will screech to a halt on any road if I spot one I can’t identify at first glance. I like to take the little squiggly lines on the map rather than the big red lines so I can look for wildflowers on the way, and I have the photos to prove it. If I had my druthers, I’d move to Monhegan Island off the coast of Maine and become its wildflower expert, now that its former expert has moved on to, uh, greener pastures.

And that’s what I liked about gardening: the flowers. All that malarkey about getting your hands in the soil and communing with nature did nothing for me but get me sweaty. The best part of that was stopping to drink cold non-alcoholic beverages.

It’s interesting living out here in Washington after so many years in New England. The flowers are so different. Foxglove is a wildflower, almost a nuisance plant along the roadside here, where it is a treasured, scarce garden flower in Maine. I can still hear Hannah, a bell-ringing friend, telling me she had some foxglove getting “nice and plump” in her garden.

And lupine is just the opposite. The lupine here is not the lovely pale shades we see in Maine. It’s mostly some sort of hybrid deep purple Kool-Aid acid test stuff. Ick.

Throwing in the trowel so easily does surprise me, because I’ve been gardening for years, ever since CF and I bought our first house 20-something years ago. We didn’t even own a shovel then. Well, we owned a snow shovel. (And a hose, because we had an inflatable pool that we kept on the upstairs enclosed porch of our apartment. We filled it from the kitchen sink. It was small, but quite refreshing.)

But I guess that’s just part of the brain damage. It makes you do surprising things, like give up things you thought you really liked, just like it makes you do things you never thought you would do.

I’m not sure if I’ve done anything I would not otherwise not have done. First, I got lost in the double negatives in that sentence, so I’m not sure what I just said. Second, anything weird I did I just blamed on all the medication.

But not gardening is definitely because of the stroke. I don’t miss it. I don’t miss weeding or digging or thinning or deadheading or watering.

Just give me the good stuff. Let me go walk in the garden. Let me go walk in the woods. Let me go walk in the prairie. With my cane.

What a sweet, innocent voice. He dredges it up from the very bottom of his soul when he really wants something, something he is certain our tired bodies, exhausted by hours of work, or our tired wallets, exhausted by piles of bills, cannot handle.

It replaces his usual full-grown teenager I-know-everything why-are-you-so-stupid voice that every parent learns to love and interpret as evidence that their child is still alive and actively mocking them to all their friends.

We are headed home after yet another baseball game. CF is driving. She is more tired than usual, because her arm is still completely encased in bandages from her second surgery, making everything more difficult, not to mention painful, not to mention awkward, but she won’t let me drive, not to mention I can’t drive this car anyway, because it doesn’t have hand controls. She tells NF, our son, that we can’t stop at Panda Express because she is too tired to go in.

The injured paw

She’s the one who usually goes in to get food for him. She doesn’t like Chinese food, and I never get anything there, because they only have about eight selections, all with beef or chicken, neither of which I eat, so we only ever stop for something for NF, and he is either too shy or too lazy to go in by himself, I’m not sure which, but I’ll give him the benefit of the doubt.

And I feel sorry for him because he pulled a muscle and couldn’t play tonight, so CF and I engage in some secret hand gestures that resolve into me agreeing to run into Panda Express. This brings about a moment of tension in the car.

“Do you know what I want?” The sweet, innocent voice is gone. The slightly challenging, nearly bickering voice is back. It’s not a challenge to my knowledge of his culinary taste buds, but his snide acknowledgement that my mental capacity to remember anything as complicated as a take-out order from the car to the counter is a bit insulting these days.

“Should we write it down?” CF offers.

“No, no,” I insist, “I’ve got it, chow mein, with a double entrée of orange chicken. And a root beer.”

“Not the rice,” says NF. “The chow mein.”

“Yes,” I say, “the chow mein.”

“Two orange chicken,” he says.

“I know. Two orange chicken.” You’d think I was the child.

There’s a rather large party pandering the express, so I start to review the order in my mind. Chow mein, double orange chicken. Chowder mein, double chicken. Chowder chain, chowder chicken. Chicken chow chain double main trouble chicken.

No, wait. Oh, look, they have those rangoons tonight. Chow mein. Not rice. Chow mein. Ciao, Maine. A small town outside Bangor. That’s Bann-gore, not Bang-err, like they say in Washington. Washing-toon. Ran-goon. Chow moon.

The pandering party is partly past posting its porder. The non-Asian server catches my eye and gives me one of those non-sympathetic sympathetic server “I’m sorry for the delay” looks that tells me she is late for her break and really has to go to the bathroom and plans to sprint away as soon as the pandering party lets her. Time for me to re-review the order I have completely forgotten and wish I had written down. I would go back to the car to ask, but the line behind me has snaked out the door like a Chinese New Year parade.

Crow train? Root blain?

Root beer! With a burst of triumph I remember the root beer, about which I had completely forgotten.

Chow mein. And root beer. Good.

A wave of my former self washes over me. I remember my own advice: when in doubt, read the documentation. What brilliance I once possessed! How often did I grouse about people who had all the information they needed to use their own equipment, their own software, at their own fingertips, but had to make phone calls, to call technical services in some far off land, hang on hold forever, just to be told to press this key or type this sequence. It drove me nuts.

She scoops a massive blob of brownish noodles into a Styrofoam container and smiles at me expectantly.

“And the entrée?”

Lassie come home, I think. What was that chicken again? I cast my eyes down the steam table.

“Chicken—orange.” Again the strangled voice. “Two.”

She gives me a weird little smile as if she deals with fried brain people all day long.

“And a root beer.” She hands me a cup at the register.

Having now been inside this express restaurant for a non-express amount of time, I step over to the soda dispenser and fill the cup with root beer, which, since this is me we’re talking about, is not root beer. It is slightly fizzy slightly flavored water. It is approximately the same shade as the chow mein. I return to my new best friend and croak that there is something wrong with the root beer.

“Oh, yes, I knew that,” she says. And off she goes to fix it, belatedly. I prevent some potential root beer lovers from facing disappointment before she returns; I don’t know if it’s my croaky voice that scares them away, the putrid mess in my cup, or what I tell them that does it, but they are saved from failure.

Herman Wouk wrote it, Stanley Kramer produced it, Humphrey Bogart acted it, and I tried it. Of course, I dropped the “i.” But without it, there was no success.

Get out your whippun chains if you want, but I think I’m done with the word play.

After nine months of thumping around with the thing, I just got tired of the cane. I got tired of remembering to pick it up off the floor where it had fallen, tired of trying to perch it on the edges of counters in stores, tired of not cracking it into the unsuspecting legs of people who failed to see me standing there with it.

The thing is, I can walk without it. A cane is an assistive device, that’s all. I’ve actually walked out of the house without it once. Just once.

About a month ago, I left the house to take the dog for a walk, and got to the top of the little hill across the street and realized I couldn’t go a step further. I had forgotten my cane. I hadn’t realized until then how much I used the cane to help propel me uphill. Fortunately, I had my trusty cell phone with me, and I called CF, who drove the entire block to pick me up. The poor pup got a very abbreviated walk and I got a ride home.

But that’s not the mutiny I’m talking about.

No, that mutiny came this week, when we took our son to the doctor. I had to drive because CF had just had a second surgery on her broken wrist, this time to repair the tendon that ruptured in her thumb (isn’t our life fun?), so I had stashed my cane in the back, where I purposefully forgot about it, despite CF’s glares as we walked the ten feet into the office.

The pediatrician first had to fuss and bother over CF’s impressive arm bundling before she could turn her attention to my lack of adaptive appliance, which caused her to assume a frightening frown when she heard it was idling in the car. Only then did she turn her attention to our child. However, I did maneuver that entire doctor visit without splattering myself onto the ground, proving, I thought, that I could in fact uncane myself.

My comeuppance came quickly.

“Do you think I can stop using the cane?” I asked CF.

“No,” she said. End of story.

To humor her, I used the cane when we stopped at the store on the way home. There’s a short flight of stairs leading down to the store door. I was thumping my way down, reviewing the shopping list in my damaged brain, when—whoa!—what happened to that step? I was lost in space.

There’s a formula associated with things like this:

The formula for falling

Roughly translated, brain damage from stroke plus brain damage from MS, divided by help from assistive device, multiplied by the number of stairs, results in the out-of-brain experience one is likely to experience when navigating vertical surfaces in the environment. At least that is what I am told. I can no longer understand math or physics or quantum geraniums, whatever those are.

Lucky for me, CF did not witness this sudden loss of equilibrium; in fact she is just now learning of it as she reads this, and so now she understands why I have so carefully been using my cane again.

I do not need it to walk. I need it to remind myself that I cannot walk for a long time without it (refer to abbreviated dog walk above) nor can I negotiate a short flight of stairs without it (refer to comeuppance). I need it to remind myself to slow down, to take wider turns, to let someone else hold the heavy stuff.

With M.S., there have been times when I have used a cane, times when I have used a wheelchair, and times when I have used a three-wheeled scooter. There have been times when I have not been able to walk at all, times when I have been unable to leave my bed or couch. I’ve sat around the house for days at a time with an I.V. pumping steroids into me, trying to break out of an M.S. exacerbation.

Using a cane is really quite minor. A stick of wood. Big deal. Get over it. This is me talking to myself.

But there is one small, final, tiny bit of mutiny I can cling to. The word “mutiny,” if you trace its origins back far enough, is related to the Latin word movēre, to move, which the cane helps me do. Ironic. My own little cane mutiny.